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The last few days have felt like an incredible roller coaster, but the good kind for once: the dips have lead right into these amazing highs that have sent shivers up our spines with hopefulness and finally culminated in today.

It was Lily’s first day of Junior Kindergarten. It wasn’t perfect, not by a long shot. We had to wake her up and she was cranky; she vomited up her entire breakfast (luckily before she was dressed) and then, during our unexpected morning bath, she pooped in the tub; she screamed through having her hair bruised and refused to look at the camera while I tried, desperately, to get that iconic “first day of school” photo, with my perfectly printed sign and her adorable first day of school outfit. Her teacher and EA seem wonderful and took the time to listen to the few things we were able to tell them this morning and are excited to get working on walking and eating. The other kids in her class are adorable and are just a little more advanced than she is at this point, which is exactly what we were hoping for – that she would end up in a classroom where the other kids might help to motivate her. However, right now Lily doesn’t really love other kids and while they told us that she did okay, reading between the lines we were able to tell that she was feeling out of her element for most of the day and had no issues voicing that.

But do you know what? This is all okay. This is nothing we weren’t expecting with Lily and frankly is nothing that all parents go through: somedays don’t work out the way that they do in your imagination, sometimes your kid vomits at the worst possible time, sometimes they’re not the amazing kid that you know them to be. This is the life of being a parent that were relishing. A little less worry about therapies and feeding schedules and heart conditions, and more focus on making the transition into school the best one for her. So while this day certainly didn’t match the vision I always had of the first day of school, I’m still flying fairly high on the fact that this is where our life is and how nice it is to be experiencing something at the same time as all of the other kindergarten parents. I never, ever thought that putting together a back-pack for school would include diapers and a foley catheter instead of crayons and lunch, but in the end it’s the backpack that matters, not the contents.

One of the things we were happy to bring along today was Lily’s new walker! While she had been fit for it earlier in the year, there was some back-and-forth between us and my insurance company about whether they were going to cover the cost that comes out of our pocket (we’re lucky in Ontario that the Assistive Devices Program does cover 75% of the cost of the walker) and we couldn’t complete the order until that got worked out. It finally did at the end of July and her pretty blue mustang walker arrived just in time for school. When we first tried it out months ago, Lily needed a lot of support to take even the most tentative steps – a lot of crouching behind her and prompting her legs to go through the motions. We’ve spent a lot of time with her therapists from Bloorview working on getting her legs ready and the difference it made was incredible. While she was cautious when we first got her in place, it only took a couple of minutes for her to put the pieces together and she took some incredible confident steps….and then she did it again and again and again. She may not be running a marathon anytime soon, but I can actually see a time in the not very distant future where she’ll be walking to school instead of being strolled there and there are actually zero words to describe how incredible that hope feels. She’s standing on this huge verge, this incredible milestone, and there is no greater feeling than watching her work out how to make it happen.

The truth is, I’m prouder of this little girl than I have ever been of my own self, and I really do think that she is going to do amazing things; it may not be some big elaborate gift that she brings to the world – she may not cure cancer or write the most incredible book of sonnets, but I don’t think a girl who works so hard and is so determined can get through life without touching people. In fact, I think it may have already started. Last week I had an incredibly interesting encounter through Twitter with an individual that I had never met, in person or online. My brother-in-law had been at a TFC game and was taken aback when he heard two of the employees at BMO Field calling each other “retards”. He tweeted both TFC and BMO Field to bring their attention to it and I re-tweeted and echoed my own sentiment that I hoped this was something they would address with their employees. This random person sent me a tweet back with a horrible response and I was completely shocked. I thought about ignoring him and blocking him so that I didn’t have to deal with his stupidity, but then I remembered this experience and knew that, in order to be the mother that I want to be, I had to address it and not just passively accept the behaviour. I attached a photo of Lily, standing proudly in her new walker, and sent him a tweet thanking him for sending such a useless response. To be perfectly honest, I expected the encounter to end there because honestly, who would respond to this? Well it turns out, this person would. Not only did he acknowledge that his original tweet was pathetic, apologize profusely and promise me that he would never use the r-word again, he then made a donation to the National Down Syndrome Association to show that he truly meant everything that he said. It was beyond anything that I had ever expected and made me so happy that Lily was able to help create this small change in the world. I can only hope that this change spurs another – that he really will never use this type of word again and maybe take a minute to share this experience with someone else and keep the change going forward.

A little extra change going on around here has to do with Giggle & Hugs itself. I had been toying with the idea of moving this site to a self-hosted domain and combining it with one of my other passions – photography. While I think that I’m still quite a way from being an actual “photographer”, I’ve been feeling more confident about the quality of the work I’ve been producing lately and have decided to take a chance on myself. So, this blog will be moving and you can come and find us here: www.giggleandhugs.com. The site is still in it’s initial stages and the focus right now is still on this blog, but hopefully over the new couple of weeks you will see it evolve into a small dream come true. If you’ve been following us here by email, then you will be able to subscribe to the new site as well and we’d love to have you!

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I’ve been taking part in a Summer Disability Blog Hop Series. The entry I wrote about the challenges we face when Lily is sick was part of that. This weeks post is asking about the Comforts and Connections that we make and as I started to write a new post, I realized that I had an older one that probably said everything that I wanted to….so, don’t feel crazy if you think you’ve read this before, and if you haven’t…then I hope you enjoy!
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There is something about Lily that really seems to attract people. I know that sounds like a proud mom boasting, and maybe this really does happen to everyone, but we seem to get stopped a lot when we’re out with Lily. There’s just something about her – her eyes, her squishy faced smile, or most usually, her hair – that makes people want to stop and say hello.

Less often, but more meaningful, are the other’s who stop us. Mom’s who look at Lily, catch our eye and share a knowing smile. They are mom’s who are walking down the same hallway with us at the doctor’s office, or riding the same bus with their own daughter. Without fail, they wait for the perfect moment and then, gently and never intrusively, come over and just want to share with us how lucky we are. These are mom’s who tell us of their own children, their own miracles, and just want us to know that beyond any hardships we, or Lily, may face, at the end of the road there is so much love. It’s always the same message – you’re going to know a love that you didn’t even know existed. They will warn us that people will be mean but they tell us to be strong and never give up hope that she will do something amazing with her life. It always something they repeat – over and over again – don’t think she won’t be able to do it, she’s going to be amazing. She’s going to surprise you in so many ways and you’re going be so happy that this is your life. Love her, they tell us, and what you’ll get in return will make up for anything you think you may have lost.

“She said I was lucky – that I’d been offered a shortcut to what life is all about when some people search for it their whole lives and never know. She said I had a secret – a secret to happiness and that, while some people may look at me and pity me, in time I’d feel like I knew something they didn’t. “Someday, Kas,” she said, “you’ll feel so happy in spite of their pity glances. And you’ll wish you could let them know – that you could show them what life is about.” ~ Kelle Hampton; Bloom

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Time is a funny thing. For the past few weeks Jess and I have been constantly reminding ourselves that “time heals” – we knew that we just needed to give Lily and her body some time to get over this bout of…well, whatever it was. And of course we were right, but those weeks felt long and it was sometimes hard to keep focused on the light at the end. But, as all of this was happening, I woke up one morning and realized that, for the first time, I had missed the anniversary of Lily’s cardiac arrest. Although I will never hear the date “July 15th” without knowing what it means in our lives, July 15th came and went this year and it wasn’t until it was over that I realized that it had passed us by. And that’s the joy of time – sometimes it really does begin to heal you.

I feel that a lot of this year has been spent moving forwards. Not only has Lily’s development moved in leaps and bounds, I think that this year has given me the chance to start moving forwards as well. In April we had an event at work where a patron died suddenly and being involved in that situation threw me for a bit of a tailspin. It brought me to the point where I questioned whether staying in my current career was the best decision for me, if I would ever be able to be involved in the kind of situations that we deal with and actually do my job without it causing this same type of reaction. I felt weak and humiliated. But then someone said something that truly and completely resonated with me; she said, “things may not get better, but that’s okay.” For the first time, I began to accept that I may never be able to react the same way to an emergency situation: I may always get anxious and I may always have a day or two afterwards that are really hard, but that’s okay. This may just be who I am now and that’s okay. For all of the times that I’ve said it about Lily, I’ve never given myself permission to accept it about myself. We’re not perfect people – our past experiences shape and define how we react to future events and for me, this means accepting that while I can deal with an emergency while it’s happening, it’s more than likely that I’m going to have a rough reaction once it’s done. By knowing and embracing that fact, I can now focus on how to get through it the next time – showing myself the same kindness and patience that I show Lily. It may not get better -it may just be different, and that’s okay.

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If, fifteen years ago, you had told me that I would be able to sit in a room, reading medical records and understand the following sentence, “loss of grey-white differentiation consistent with Hypoxic Ischemic Encephalopthy; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring the the posterior frontal lobe along the vertex”, I would have laughed you out of that room. I skipped any part of grade 10 science that involved dissecting anything and followed that by never taking another science class again because words like, “ischemic”, and “encephalopthy”, actually caused me stress.

But, here I am, fifteen years later, and that’s exactly how I spent my morning.

After Lily’s yearly visit with the thrombosis team at Sick Kids in November, we realized that there were some gaps in our knowledge of Lily’s medical history – nothing really significant, but things that you couldn’t know unless you had been beside her listening to daily rounds. And, as those of you who really know me may be able to appreciate, I don’t like the feeling of not completely understanding what’s happening to someone I love. That’s my role in our family – when someone gets sick, I start to research and I don’t stop until I have a very firm grasp on the entire scenario. So, shortly afterwards, I made an appointment with the Health Records department at Sick Kids to come in and view Lily’s medical records and that’s where I spent my time this morning. They were kind enough to set me up at a little round table and slapped 4 massive folders in front of me. After a quick lesson on how the charts are arranged, they left me in peace to read to my hearts content. I’m very happy to report that there were no major surprises: a small allergy that we didn’t know about, a little more family information from the social work department, and the knowledge that Lily’s PVS was diagnosed before she came into our care (we had always thought that it was simply suspected and the surgery she had shortly after she was placed with us confirmed it) and she had actually already lost function of her lower left pulmonary vein before she was 4 months old.

What was amazing to me, although it shouldn’t be surprising, is how surreal it felt to be staring at one or two sentences that actually fill our entire lives. It’s amazing how words can do that, how sometimes they actually just say the bare minimum and not say anything at all. If you were just someone reading the sentence, “loss of grey-white differentiation consistent with HIE; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring in the posterior frontal lobe along the vertex,” you would just read the words. Maybe you would understand that it means a brain injury that occurs when the brain is deprived of an adequate of oxygen and that the injury is shown mainly on both sides of 3 different lobes and at the back of a fourth. But, you don’t really KNOW what it means; you don’t know that it means that Lily will be blind, totally and completely blind for 3 months and then suddenly one day start seeing again. You don’t know that it means that Lily will not move the left side of her body for what feels like forever, and will struggle to sit up and to hold a toy until one day she sits up and then she bum scoots across the floor and then starts pulling things off of the coffee table and bounces in excitement when you hold up Hug Me Elmo because she’s so excited to play with him. You don’t know that it means that Lily is delayed in her speech and sometimes you’re so afraid that you’re never going to get to experience that moment where she turns, looks up at you and calls you Mamma until one day she starts pulling on the cats tail and looks another child in the face and you’re a little less afraid. Two sentences that seem like nothing more than words on a page, but that make up every single day of our lives.

But then you get to think about it a different way. There were a lot of other words in those charts – a lot of words that basically said that a lot of people were uncertain about Lily’s future and suddenly you’re thinking about Lily and realizing that she is proving these 4 charts of words wrong. Those words mean nothing when it comes to determining who Lily is and who she will become. She has surpassed the expectations of so many people and this is just the beginning. I left the medical records department and met my lovely wife and my incredible daughter and we all went upstairs and had our visit with Lily’s neurologist. And instead of thinking about those two sentences, I kept thinking about the other words that have become a Lily mantra of sorts, the ones that, to me, sum up Lily far more accurately than anything written in those 4 charts…

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I know you have all been so supportive and amazing with Lily so I thought I would blog a quick update since I may not get another chance for a bit.

Lily had been doing well (as well as expected) after our event on thursday. They
had pulled her off the ventilator but still needed a little oxygen help but
overall the doctors were happy if not still unsure about what caused everything.

Yesterday however, Lily started having seizures. They started randomly and only
lasting 5 – 10 seconds but by the time they did an EEG at 3pm , it showed that she had 5 seizures in 30 minutes, some lasting as long as a minute. They
ran a CT scan last night and the report was not so great: her brain is swollen and there are signs of injury that were caused by the lack of oxygen to the brain while she was in cardiac arrest.

They are not able to tell yet how significant the damage is – although she will
have an MRI in the next 24 hours to help determine the exact area of the
damage. They started her on seizure medication last night and she hasn’t had any seizures since then. She’s made, what we think, is a little eye contact
today and has grasped our fingers a little bit. There’s no way of knowing
what this means for the long term but these are certainly good signs.

So, if you haven’t used them all up, please keep sending those positive thoughts
and hopefully soon we can update with actually positive news soon